N's Journey

N's DTKAFO Cunningham Brace Clubfoot Journey

Our Story-

A year and a half ago my daughter was born surprising us with bilateral clubfeet.  At two weeks old she began being treated at our local and world renown children's hospital. They had outlined Ponseti treatment and because her clubfeet (cf as we call it in the community) were a surprise, I hadn’t had any time to research. My gut began telling me something was wrong and on a friends advice I searched the internet for support on this journey. I found facebook clubfoot groups and everything changed for the better. We traveled to see Dr. Morcuende who is Dr. Ponseti's successor and the chief medical advisor for the Ponseti International Association.  In just 4 casts and a tenotomy procedure; which is where the achilles tendon is cut to allow it to regrow to a proper length in hopes of maintaining the correction, he corrected the mess 13 casts and 4 doctors had made of my daughters feet locally. 

Finally my daughter began the maintenance or bracing perdiod of treatment at 5 ½ months old (it should have been when she was 3 months old.  She wore the boot and bar brace full time, 22 hours a day with two breaks for bathing, playing, and new socks.  During the day she didn’t mind them but she could not sleep longer than 45 minutes to 2 hours at night and naps were nearly nonexistant. I clung to the advice that if we were consistent, she would adjust. Fast forward 4 months, she still wasn’t sleeping and she thrashed and cried. all. night. long! Tears streaming down her face. I saw a post from another mom who was using a single leg brace with great success.  It's called the "Dynamic Torsion Knee Ankle Foot Orthotic" or DTKAFO or Cunningham Brace.  I began doing my own research, I found and talked with other parents who had used the brace and read about how the brace worked in the technical document. This took some time and in April 2017 I took my little one to Maine to be measured and fitted for the custom made Cunningham Brace/DTKAFO. 

This was the right choice for us! My daughter has been in the DTKAFO for over 6 months now and our quality of life has greatly improved! She only wakes 2 to 3 times in 12 hours and isn’t crying at night anymore. She can stretch and even walk in the brace but since taking her first steps at 15 months she’s now walking everywhere and wearing the brace for naps and night time and long car rides. We've had a couple check ups in the last six months and the doctor (who had never heard of the DTKAFO) is absolutely in awe of my daughter's feet and her flexibility.  He could hardly even tell she was born with clubfeet or the awful treatment she'd endured that made her feet complex (compounded the issues of clubfoot by compressing her feet/tendons/muscles rather than stretching them properly).  He reported that our little one’s flexibility is excellent, that her bones are right where they should be according to his physical exam and xrays and that he doesn’t think she’ll ever have a recurrence!!!!!!! I burst straight into tears! My little one, now 18 months old, is running, climbing and quite agile.  Her feet are perfectly symmetrical and the bones and soft tissue perfectly aligned.  As a clubfoot mom, that's precisely what i'd always hoped for and what seemed equally out of reach after her feet were made complex.  Sticking with the Ponseti Method alone and the boots and bar brace could have led her to having a chance of recurrence as high as 70%.  For us, that was simply not an option.  Although research on clubfoot is thin at best, it's undeniable that surgical correction and maintenance leads to lifelong chronic pain with many of those having endured this reality, opting for amputation. This will not be the reality for us but i am thankful for the hundreds of conversations with other individuals and parents dealing with clubfoot who've illuminated this stark reality so that it won't always be repeated.

Always follow your gut mommas and daddies!  The best thing you can do is your own research.  Where there is a lack of research, trust experience and reach out to other clubfoot families.  There is no harm in stopping treatment until you can get your little one into more skilled hands, if there are problems with treatment. You know what’s best for your child, fight for it, clubfoot treatment is quite challenging but there are many avenues to success, keep looking, you will find what’s right for your family! 

And ALWAYS feel welcome to reach out to us for support or with questions! Through this journey I was also in graduate school and did my graduate research on how the clubfoot culture has been created. I have both looked at this through my mom eyes and the lens of Cultural Studies, there are a lot of politics involved in cf treatment that should be taken into account when we work to create effective treatment paths for clubfoot.

Progress Updates

May 8, 2016

Hi everyone, here is our first update. My love has now been in the brace for a month. She was previously in boots and bar (bnb) for 7 months and she was waking every 45 minutes to two hours crying and thrashing as if she was in pain, tears streaming down her face! (it’s been a long year with improper casting lasting 5 1/2 months and then bnb!) She is 13 months and getting molars and had a cold right after we got the brace but her teeth are mostly in and sleep has improved a lot! She doesn’t mind the brace at all if it’s on when she’s awake and playing but she is almost walking so she wears it for naps and night time. 

I am so grateful for this brace because it has given me some hope that she won’t relapse which I didn’t have before using it. We’ve had an incredibly hard clubfoot journey. We were surprised by her cf at birth and when the Ponseti method was explained at our local children’s hospital (we live in Washington) it sounded very straightforward and they led us to believe after casting and tenotomy she would be ‘cured’. However, the weeks went on and her feet became very complex (the issues associated with her clubfeet-tight tendons and tissue, was being compounded because the team of doctors were improperly treating her feet.  Once we realized she was receiving failed Ponseti Treatment we traveled to Iowa for corrective treatment when she was 4 months old(she'd had 13 casts), she had 5 more casts including the post tenotomy cast and at 5 ½ months old she finally went into bnb. I never imagined she wouldn’t adjust to bnb. 

We started with the Ponseti bar and after a month tried the Dobbs bar. I have been doing cf research since my little one was two months old and because of all the trouble we’ve had with treatment I’ve been very concerned she would relapse (for complex clubfeet there's about a 70% relapse rate with the Ponseti Method) and I would do everything I could to prevent any surgical intervention including a second tenotomy. 

I researched the DTKAFO for a few months after initially seeing it in Delphine Le Boulanger Reid's updates on the facebook groups "Clubfoot Mommas" and "Clubfoot is Treatable" and after numerous conversations with families using it and Jerald Cunningham the orthotist in Maine who custom fits the brace to each child, we decided it was really the best option available to us. After all we’ve been through and the research I’ve done I’m incredibly confident in the DTKAFO and Jerald’s ingenuity. 

Finally, I’m hopeful!

Here’s my love going on about the business of play within minutes and hours of being fitted for it.

 

July 12, 2017

A HUGE Celebration

A year ago my daughter’s bilateral clubfeet (bcf) were being treated with the Ponseti Method of Clubfoot Treatment but little did we know, treatment was failing her and her feet were becoming complex.  Complex means that the issues associated with clubfoot like tight tendons, ligaments and soft tissue in the feet, were being compounded.  The doctor had outlined Ponseti treatment and because her bcf was a surprise at birth I hadn’t had any time to research. My gut began telling me something was wrong and on a friends advice I searched the internet for support on this journey. I found clubfoot facebook groups and everything changed for the better. We traveled to see one of the leading Ponseti Clubfoot doctors and in just 4 casts and a tenotomy which is where they cut the achilles tendon allowing it to regrow to the proper length in hopes of sustaining correction, the doctor had, we thought, corrected the mess 13 casts and 4 other doctors had made of my daughters feet. 

Finally we began bracing at 5 ½ months old, during the day she didn’t mind them but she could not sleep longer than 45 minutes to 2 hours. I clung to the advice that if we were consistent, she would adjust. Fast forward 4 months, she still wasn’t sleeping and she thrashed and cried. all. night. long! Tears streaming down her face. I saw a post from another mom who was using a single leg brace with great success. I began doing my own research, I found and talked with other parents who had used the brace and read about how the brace worked. This took some time and in April I took my little one to Maine to be measured and fitted for the Cunningham Brace/DTKAFO. This was the right choice for us! 

My daughter has been in the DTKAFO for just over 3 months now and our quality of life has greatly improved! She only wakes 2 to 3 times in 12 hours and isn’t crying at night anymore. She can stretch and even walk in the brace but since taking her first steps a little over a month ago she’s now walking everywhere and wearing the brace for naps and night time. At my daughter's first check up, which we did at a local hospital where both the Ponseti and French Functional Methods of CLubfoot Treatment are practiced, the doctor reported that our little one’s flexibility is excellent, that her bones are perfectly aligned according to his physical exam and xrays. The doctor said that he doesn’t think she’ll ever have a recurrence!!!!!!! I burst straight into tears! Always follow your gut intuition.  You know what’s best for your child, fight for it, clubfoot treatment is quite challenging but there are many avenues to success, keep looking, you will find what’s right for your family!

October 2017

One year ago and now, glad we're free from the Mitchell Brace (bnb)!  Here's N helping make adjustments at her check up with Jerald. It's so helpful to have a team to work with on this clubfoot journey!